Carolyn’s tumor was removed and brought to Dr. Yu’s lab, where they are studying it and creating a specialized treatment vaccine just for her. I have learned that no one’s glioblastoma is the same. There are many different kinds of glio tumors. This is why each patient must have an individual vaccine protocol. Carolyn has what is classified as “giant malform glioblastoma.” This is the most aggressive glio due to its massive size. The brain, unlike other areas of the body, does not fill in void areas after tumor removal. Giant malform glios take up a massive space in the brain, often compromising other areas needed for basic functioning. Carolyn’s tumor infringed on parts of her brain that controlled language and numbers. Carolyn has asked Dr.Yu to show her the actual tumor, and she visits his lab with Chris. Dr. Yu is very excited about the work they are doing, and once again, we feel moments of hope.
I have ordered Matson a knight’s costume he wants that says “Sir Matson” on the cape. It’s ridiculously expensive, and at this point, I really don’t care. It comes with a sword, and Matson loves wearing his new outfit and pretending he’s in a sword fight with invisible demons. We are all somehow fighting these invisible demons. Matson’s the only one brave enough to do it in front of everyone, with his sword. I’m beginning to grasp how short life is. “Celebrate the big days, pull out all the stops,” said my Grandfather Ossie. “Those are the ones you’ll remember.” I decide to surprise the kids, and we skip school one day to drive to Disneyland. Dines’ brother, Sage, who lives nearby, joins us. The kids adore him. We spend the day seeking joy. Matson is smiling. Fliss is smiling. It feels like months since we have all smiled.
Dines is creating special joy back in Ojai. He has spent weeks accumulating supplies to build a skateboard ramp for some of our friends’ kids. Dines loves skateboarding as much as they do. Driving up our friends’ driveway, I spot the wooden ramp for the first time on the side of the old ranch farmhouse. It is shaped like the letter C but sideways. Dines is standing on the right side of the ramp and waves enthusiastically at me as I put the car into park. He has a helmet on and pads on his elbows and knees, just like Earl, our friend’s ten-year-old son. Earl and his friends regularly call the house to see if Dines is available to hang out. He jumps at the chance most days, and Matson and Fliss go with him. Matson uses a scooter with handles, and Fliss attempts to learn the skateboard. Today, Dines is showing Earl some moves - like building up momentum, skating side to side so he can jump while turning in the air when he finally reaches a high enough speed. Watching Dines is strangely therapeutic…he goes side to side, left to right, time and time again. His motion is smooth and the sound calming like waves… “swoooooosh, swooooosh.” Then suddenly, the jump! I instinctively hold my breath as I watch his board leave the safety of the ramp top and soar into the air. I audibly inhale after he executes his turn and swiftly lands his board on the ramp floor.
Matson has decided we should start decorating for Christmas before Thanksgiving. Given the year, I of course agree, and we start by putting up the kids’ craft tree in the family room. Matson’s idea is to make a huge garland out of all the Silly Band bracelets he made over the past year. I wonder how many other families have Silly Band garlands on their trees this year. They look great. We add it to the craft collection, which includes ornaments grandparents made in 1954 and ornaments Dines made in 1979. There are ornaments added from my brother-in-law’s family, my husband’s family, ornaments from our childhood home in Minnesota.
Carolyn has decided she hates being alone at the Los Angeles apartment, and she begins to come home a few days a week when she can, to be surrounded by our family. It’s hard driving back and forth, so Chris and I trade off taking her to treatments and appointments. I spend hours watching Jennifer Steinkamp’s projected floral artwork in the waiting room of the Orcian Center while Carolyn undergoes radiation treatments. Jennifer is a friend of Carolyn’s, and this artwork offers a comforting and calming way to pass the time. I often close my eyes during longer radiation sessions. I think of the flowers in the artwork moving back and forth. I picture Dines on the skate ramp moving back and forth. I hear the “swooooosh, swoooosh” in my head. I instinctively hold my breath when I hear the lobby door re-open, finally exhaling as I she reappears in the doorway. Carolyn’s memory is worse after her treatments and much worse after the second surgery, but as I walk through the halls with her, holding hands, I see her memory of fine art hasn’t gone away. Cedar Sinai has a phenomenal art collection, and Carolyn points to pieces, telling me about them in her accomplished “art dealer speak” as we walk through the halls.
Chapter 15, Minneapolis, 1979
IN CHARGE
“Carolyn,” says our mom, “came into the world in charge.” When Carolyn and I were young, Dad put us in the backyard on a hot summer day with a bushel of daffodil bulbs to husk. It was too messy to do inside, so we often sat on the patio, husking away. Sometimes we snapped the tops off green beans on the patio too. My dad, a horticulturist and teacher, was running a 4-H Program in Saint Paul, and he had amazing quantities of vegetables and plant material to bring home in the summer from the 4-H garden. We loved this. Summer in Minnesota was full of fresh-sliced tomatoes, rhubarb pies, green beans, fried eggplant, enormous cucumbers, green bell peppers and corn. In the winters of the 1970s we didn’t have transported produce like we do now, and we often had to eat only canned vegetables like peas, stewed tomatoes, creamed asparagus, and yams. Eating fresh vegetables the day they were picked was a culinary fantasy for the taste buds. In my adult life, at restaurants, I always request salads without tomatoes, but not because I do not like them. It is because once you have tasted and savored a freshly-picked tomato from the garden, you can never really enjoy a month-old picked and then refrigerated tomato ever again. Dad also brought home flower bulbs from his 4-H Program. He was so excited to have them peeled so that after dinner we could plant them in the ground. Dad went inside his greenhouse to gather all the planting supplies needed, and Mom ran to our next-door neighbor’s house to grab an ingredient she needed for dinner. When they returned to the yard, Carolyn was not peeling the bulbs. Rather, she had set up chairs in a circle and assembled me and a group of eight neighborhood children to husk the bulbs for her while she rode her tricycle around and around.
The summer brings the Annual Horticulture Convention in Itasca, Minnesota. Governor Al Quie has just been elected, replacing Rudy Perpich. Al is an old college friend of my father. Dad decides at the last minute to hop in the car with the family to attend a dinner the Minnesota Horticultural Society is throwing for the new and former governors. In true “Dad form”, he brings two army green World War II sleeping bags in the conversion van for the trip. No Disneyland or fancy hotels for this crowd. Our dad, the age of most of our friends’ grandfathers, believes in roughing it – at least when it comes to the kids. We are handed the World War II sleeping bags, and we are expected to sleep on a cold tile floor. Carolyn and I wear our matching velour tracksuits home, the highlight being a much anticipated stop at the mouth of the Mississippi River at Itasca, where we can walk across the river in five steps or fewer. We are caravanning with a handful of Dad’s “plant friends.” Jean Bodine is our favorite. She runs instead of walking all the time, and when we see this, Carolyn always whispers to me, “Move over! It’s Jean Bodine the Running Machine!” Inside the van, Carolyn and I busy ourselves with crafts – our favorite being latch hook stitching. We also love Mad Libs and any gas station stops where we can find Orange Bubblicious bubble gum. My mom is upset at my father, who, as usual, has started the road trip by presenting her with a five dollar bill to spend. He thinks this is hysterical. Carolyn and I roll our eyes in the back seat. A little Anne Murray on the eight track always makes Mom feel better, but Carolyn and I vow our vacations will be amazing when we grow up. On our way to Itasca, we make a list of dream destinations: Paris were Madeline lives and definitely New York to see the Plaza Hotel and Eloise!
Chapter 16, Ojai, 2013 Pre-Diagnosis
It’s Christmas morning, and Fliss enthusiastically opens her Christmas gift from my sister. Fliss looks like she could be Carolyn’s daughter too, and seeing Fliss this Christmas morning reminds me of all the Christmas mornings Carolyn and I shared as little girls. Carolyn is always over-indulgent with gifts for my daughter. Fliss squeals with delight as she reads her gift this year is a shopping trip – to Paris! Carolyn explains she is hosting a “sister trip” with our kids to Belgium, England, and France when school is out in June. She has had a fantastic work year, selling art to a new group of savvy New York collectors and wants to share her success with those she loves. This is not uncommon for Carolyn. She has always had a generous heart. She bought my dad a new greenhouse when his was dilapidated and needed to be dismantled. When I started my design company, she showed up at my door with a new MacBook Pro. Carolyn’s generous spirit always breeds more success in her life. Her generosity towards others gives her just as much joy as it does the recipients. Shoes are a BIG DEAL to Carolyn. She wants people to have great shoes. She’d recently come back from a European business trip with great suede boots for herself and a pair for me. When my sister-in-law was just entering the work world after college, Carolyn was dismayed that she had no dressy shoes. She handed my sister-in-law a pair of Miu Miu wedges, saying that they didn’t fit her. I said nothing, although I had been with Carolyn when she tried them on and purchased them. Carolyn introduced Fliss to the Saks shoe department in New York City, telling her, “You should always work hard enough to buy yourself one great pair of shoes here every year.”
I once read that Jackie O. and her sister Lee Radziwill lived beautifully because they knew how to edit. This too is true of Carolyn. Her clothing is beautifully curated, like her art. She buys minimal but extraordinary pieces of collectible furniture. She says, “If we’re going to do this, let’s REALLY do this.” For instance, she drives all the way to the Heath Pottery Manufacturer in San Francisco to purchase a new set of Heath dishes. She pours over auction sites for months to find a deal on vintage Barcelona chairs she dreams of owning. Her level of taste is incredible. Carolyn cultivates friends in the same way; she has many casual acquaintances but fewer inner circle friends who are included in trips, dinners, and weekends at her home. This inner circle is a dynamic, interesting, and successful lot, often in very focused areas of interest that appeal to Carolyn. The group as a whole is just as dynamic as each individual person. This is what makes her dinners so incredible. Carolyn is the bandleader and effortlessly conducts the flow of conversation. Her humor far outweighs any of her other talents. Carolyn’s friends know if she is gathering them together, they will be extraordinarily well-fed and also highly entertained.
Chapter 17, Ojai, 2015
* SISU
*Sisu - stoic, determination, grit, bravery, guts, resilience and hardiness, expressing the historic self-identified Finnish national character. Every Finn feels “sisu” coursing through his/her veins.
Carolyn’s mind is a mess from forty-two days straight of radiation and oral chemo. Personality-wise she is almost unrecognizable. There are long pauses in our conversations when she can’t think of a word or when she forgets entirely what she is saying. I am relieved there will be a pause in treatment for now. I am hoping some of her missing self will resurface. I’m sure Chris feels this way too. She often can’t remember his name and refers to him as “the other sister.” My foster brother, Tom, who came to live with my family when he was eight, has just left. He and wife, Rachael, brought their new baby, Jackson, to see Carolyn. We had seen Jackson just after he was born on a sister trip to Austin. He is now just old enough to begin to have fun with family. Tiny for his age, he feels like a doll when I hold him. Knowing we could all use some inner strength this holiday season, I purchase crocheted Scandinavian Viking hats for all of the kids. Matson and Jackson wear hats with Viking horns. Fliss’ hat has horns and long orange yarn braids. My brother is a Lutheran pastor, and this is a rare year of relocation for him and his family. Normally, this is a working holiday for them. I want so badly to make every moment memorable, but Christmas is a blur. I vacillate between moments of sentimental holiday joy and frozen moments of terror in which the voice inside my head reminds me this may be our last Christmas with Carolyn. We are blessed that each day she is feeling more rested and relaxed. I notice she is sleeping later in the morning than when she is on her chemo treatment plan. She is able to endure a road trip to the ranch in Palm Springs, and we all relax and rest with her. The sun feels amazing as it hits my pale skin poolside. There is a chilly breeze, but the direct sunlight is warm and feels almost healing. We need this as a family. Carolyn and I love El Mirasol, a Mexican restaurant in Palm Springs, that has been part of the local scene for decades. We order “Cadillac Margaritas”, which are made with top shelf tequila and a shot of Grand Marnier, no salt and on the rocks. The glasses are massive and heavy, and when I look at her sipping hers across the table, it looks as if she’s holding a fishbowl. Carolyn loves Chicharron without the tortilla. I always order cheese enchiladas with red sauce, beans, and rice. It has been our tradition to stop at El Mirasol prior to arriving at the ranch. Sipping a pre-family holiday margarita is mandatory.
Shortly after the new year, Carolyn is able to see our friends, Jon and Christian, who live nearby. Jon is a doctor, and it gives Carolyn comfort to talk about the conversations she is having with her doctors and the treatment plans they are suggesting down the road. Christian keeps our wine glasses full and regales us with stories of his real estate career and former life in San Francisco. It is a fantasy come true to see Carolyn in good spirits. I dread that in less than a week her oral chemo will commence again. Two wine glasses in, I tear up thinking about moments like these that will again be lost. She tells Jon of her doctor’s newest plan for her glioblastoma. She will receive daily oral chemo for a whole year. I can’t help but think, “How can anyone survive a daily dose of chemo for a whole year?” If she is already having trouble articulating thoughts after forty-two days of treatment, what state will she be in a year from now? Will she even be able to speak? Will she forget my name as she has Chris’? How will Matson handle THIS?
Jon tells me to cultivate as much joy as I can for my sister before treatment begins. I call many of her friends. Her childhood best friend, Mary, visits from Minnesota. Her college roommate, Kathy, comes to stay. Art dealer friends, David and Alex, visit from New York. Mark and Don, friends for two decades, drive up from Los Angeles. Carl visits Carolyn again at my home. Friends Andrew and Birge fly all the way from Berlin, bringing their children to see Carolyn. I am trying to stay in the moment, trying to create lasting joy in these small visits with friends. I make sure Carolyn’s favorite rosé is on hand in case she wants to share a glass of wine with one of her guests. I am meticulous about my housekeeping. Managing our chaos by tidying and cleaning is a newfound outlet for my worry and dread. Cleaning is better than thinking about future doom, which leads me down a desperate spiral I don’t dare imagine. Instead, I polish silver or dust the living room. The sound of the vacuum lulls me into a calmer state of mind… “swooosh, swooosh.” At night, I drink one more glass of wine than I should or take a larger dose of Melatonin - anything to distract me and numb the deep down pain.
Chris and I still swim every other morning on the Masters’ Swim Team. The quiet stillness of the world underwater is therapeutic. I breathe as few times as possible while swimming laps. I extend the underwater push off of my flip turns to almost the halfway point of the pool. I do this so I have more moments of silence than noise. I get out earlier than the other swimmers on my team so I can shower and enjoy the sauna alone. I close my eyes often in the sauna so all I see is darkness. I imagine I am traveling through Carolyn’s brain. I see flashes of light. I pretend these are blasts, blowing up her cancer and destroying tumors. This comforts me. Sometimes, in my imagination, I am in her brain on a ride – like the Toy Story ride at Disneyland. I am holding a
large laser gun that looks like a Super Soaker. I am now the instigator of these blasts. I am ridding her brain of all unwanted intruders. Matson, I imagine, is often with me, wearing his cape and wielding his sword. Sometimes I sit in stillness. Sometimes I pray. I try to remember every God-focused praise song from my childhood church camp, Cathedral of the Pines. Maybe singing these songs in my head will wake up God, if He is there, to the miracle that needs to happen to save my sister’s life.
In February, Chris’ mom, Joan, generously offers to buy Carolyn a wig. Carolyn and I drive to Los Angeles to pick it out. Doug, a flamboyant, artistic gay man, helps us tour our wig options. He is wearing tight maroon straight-legged pants, a white shirt that is only halfway buttoned-up, and artsy black-rimmed glasses like Buddy Holly. He says he used to be a costumer for the studios, but wigs have always been his favorite thing. I never knew there were so many choices when buying a wig. Raquel Welch has a signature line of wigs. There is a wig company called Sassy Secret, which Carolyn and I think is hysterical. Doug goes beyond his job description selling us a wig, trying on many for us so Carolyn doesn’t have to take off her cancer cap. We leave with a beautiful blonde wig that’s shoulder length and authentic-looking because it’s made with real blonde human hair. On days Carolyn feels good, putting her wig on seems to renew her spirit. Losing hair and having her scars visible, or even having to put on a “cancer hat”, is often terrible. I didn’t know this before Carolyn was sick. I vow never to send a sick friend one of these hats. It’s totally depressing when they arrive in the mail. It reminds Carolyn that she has cancer. Wearing a cancer hat elicits stares from everyone and the “bless your heart” face she hates. Now, when they arrive, I put them away without showing them to her. I text a thank you to the sender and then pretend it never happened.
The Situation Page 5